Dementia is no sneak thief.
It doesn’t steal your memory and independence silently or all at once. Instead, it takes its time, rattling cupboards and banging on windows, giving plenty of warning signs that you’re at risk of being robbed.
More than 55 million people worldwide live with Alzheimer’s disease and related disorders, with many millions more likely to follow. In every single case, there were many warning signs of oncoming dementia.
Understanding these clues could help patients get better, faster care, save families untold money and suffering, and reduce the costly chaos now plaguing our overwhelmed medical systems. But first, we must get better at spotting the thief’s tracks.
We are an international group of experts in geriatric medicine, population health, epidemiology, bioinformatics, and pharmaceuticals, united in our determination to help physicians worldwide reach people with oncoming dementia. At the same time, there is still time to help. Our goal is an early warning system for Alzheimer’s Disease and related illnesses and mild cognitive impairment, a milestone on the path to dementia.
Here’s the scenario we want to avoid: the unexpected call that your mother, who might previously have seemed simply somewhat forgetful, has been picked up by police while wandering far from home. She didn’t develop dementia overnight but may as well have since now you find yourself waiting for hours in an emergency room while scrambling to find a scarce hospital bed. The even worse news is that, on average, patients face up to 50 months of delay in getting an appointment with a dementia specialist.
Our mission is increasingly urgent. The number of people with dementia-related disorders worldwide doubles every 20 years and – barring medical breakthroughs — is predicted to reach 78 million by 2030.
Most of these millions live in low-income countries and traditionally underserved communities in wealthy nations. That’s because dementia discriminates along the lines of race and class. Historically disadvantaged groups receive less high-quality medical care. They are at higher risk of dementia due to poorer general health with many possible causes, including excess stress, unhealthy diets, and poor sleep.
There is ever-increasing hope for better methods to diagnose dementia, including novel blood tests. At the same time, new and in-the-pipeline medications may help delay and reduce symptoms, giving patients and their families precious extra time and quality of life. Once patients are identified as being at risk, doctors can also prescribe behavioral changes, including more aggressive management of preexisting ailments and sleep issues.
For any of these interventions to help the most people, most efficiently, however, there’s lots of work to do.
We already know what we’re looking for. The hints may be found in billions of pages of medical records and trillions of signals captured by smartphones and other digital devices. A doctor may note a family history of dementia, combined with signs of diabetes, obesity, or depression, on top of new complaints of failing memory. A digital tracker may reveal steadily decreasing physical activity. These clues could all feed into a triage system, resulting in better – and fairer – quality of care for the maximum number of people. But before that can happen, we need to improve our existing clinical health systems and figure out a method of capturing all those clues.
In April 2022, our new team met for two days in Washington, D.C., to examine what we know versus what we need to know. We recognize the significant challenges to our task. Health records are limited, particularly in less-developed communities and nations. Doctors vary dramatically in what they choose to record. Many researchers before us have created algorithms designed to track signs of oncoming dementia but have not yet managed to test and deploy them. Finally, even when patients are identified as at-risk, many resist taking tests for dementia.
Tackling these issues is no small task. We must start building a national and international commitment to increase awareness of oncoming dementia for patients, families, primary care physicians, and clinical system administrators. A global, public/private partnership, free of conflicts of interest, can oversee the validation, verification, and accreditation of new tools, such as computer algorithms, to detect early signs of dementia among patients seeing doctors for routine health care.
We need physicians all over the world to improve their note-taking systems. While our focus is global, we urgently need US health systems, including the Veterans Administration and public and private health care payors, to determine new standards for coverage. We’re not in this alone, and there is no lack of will. All over the world, governments, business leaders, activist groups, and philanthropists have long recognized the need to do much more to reduce the horrific toll of dementia. We hope to add to their considerable efforts by helping point the way forward.